by Lonnie Pacelli
My fiction book, The Lawless One and the End of Time, has four main characters who meet at age 14 in Naples, Italy and all grow into globally-recognized figures. One of the characters, Bert Winn, was fascinated with history. He loved the concreteness of historical facts; they either happened or they didn’t. He met and fell in love with Laura, a math major he met in college. He graduated college with a Ph.D. in history and became an acclaimed professor. Bert and Laura married and had a son they named JT. The Winn family became internet celebrities and millions of people subscribed to their online video blog. Subscribers loved to hear their messages of fact, inspiration, and challenge. Their message? An unvarnished, inspirational view of life with Autism Spectrum Disorder.
Bert started showing signs of autism at eighteen months with speech delay, difficulty maintaining eye contact, and a dislike for being cuddled. As Bert grew, he and his mother developed strategies for how to accommodate some of Bert’s sensitivities, such as a “beach ball kiss,” in which an imaginary beach ball filled space between them when they kissed hello and goodbye. Laura too had sensory issues, particularly with clothing fabrics. The two of them learned to cope with their sensitivities through the years, so they became normal for them. It also felt normal for their son, JT, to be on the autism spectrum. They didn’t view themselves as people to be pitied, but used the opportunity to help others understand the world of autism and how people on the spectrum could thrive just like anyone. Their story educated and inspired millions and gave those affected by autism hope.
The story of Bert, Laura, and JT were heavily influenced by my wife Patty’s and my experience raising our son Trevor. He was diagnosed with Autism Spectrum Disorder at age five (the clinical diagnosis was Pervasive Developmental Disorder, Not Otherwise Specified or PDD-NOS) back in 1998. At the time, autism wasn’t well known and our only exposure to it was Dustin Hoffman’s character in Rainman. We had no idea what the future had in store for us as a family. Would he ever graduate high school? Would he drive? Would he have relationships? Through the years Trevor amazed us with what he was able to do and how he learned to cope with his autism. Today he is a college graduate who lives on his own, drives, works, and has an active social life. Yes, he has challenges that will be with him for the rest of his life. But we learned an important lesson with Trevor; the moment we underestimated him he proved us wrong.
You may have your own perceptions of people with disabilities, whether it be physical (paralysis), cognitive (autism), present at birth (Down Syndrome) or related to an injury (amputation due to an accident). Your perceptions may be due to personal experience, observing a friend or loved one, or what you see in the media. Your perceptions may be inclusive or biased. Only you can decide.
So, what’s your action? Educate yourself. Disability:IN, American Association of People with Disabilities, Special Books by Special Kids, Autism Speaks, Center for Disease Control and Prevention’s Disability and Health Overview, and Northwest Center are some great resources to help you better understand people with disabilities. Do your own web searches, just make sure the information you’re taking in is from credible sources.
Take the time to learn more about disabilities and focus less on the “dis” and more on “abilities.” Oh, and if you want to learn more about Bert, Laura and JT’s story, check out The Lawless One and the End of Time.
Inspiration for Life with Autism
This blog has a variety of articles about people living life with autism, and topics and ideas that can help in the journey. Guest bloggers are welcome. Inspired by Trevor, a young adult film critic, photographer and college graduate on the autism spectrum.